Millie's story

Finally a diagnosis

We were then given the devastating news that Millie had two brain tumours and cancer of the spine. She was immediately transferred to the High Dependency Neurological Unit at Birmingham Children’s Hospital.

Millie then underwent a series of six neuro operations to stabilise her cranial pressure and identify the cancer. Her biopsies were sent to Nottingham University, France and the USA. All three cancer centres returned a verdict of ‘unknown’.

Millie’s cancer is so rare that it has no name and Millie is only the tenth child to be diagnosed in the last 30 years.

Ten months of gruelling treatment

We spent the next 10 months in hospital undergoing numerous procedures including 10 months of weekly chemotherapy. Due to the level of chemo, Millie suffered horrendous side effects. This included neuropathy, which resulted in her being unable to walk and being confined to a wheelchair. As her neuropathy worsened, the decision was taken to stop the chemotherapy before we reached a point of no return. Millie then endured a seven-week course of neuro and spinal radiotherapy. Again, the side effects were horrendous as Millie suffered radiation burns and sickness. On completing the radiotherapy, Millie’s brain went into shutdown and she spent some four weeks in a coma.

It’s still not over

We are now at the point where Millie is home and we are undergoing eight-weekly scans. To date, the last two scans have had mixed results. The treatment that Millie has endured over the last 18 months has put significant strain on her body.

Millie has received a total of 47 blood transfusions and 39 platelet transfusions as well as numerous neurological operations.

Update: April 2022

Since the pandemic hit in March 2020, Millie has had stable brain scans. She was in total isolation due to COVID-19 restrictions and a compromised immune system. We literally didn’t leave the house for the entire period other than hospital appointments.

Come summer 2021, Millie had a shunt failure, which meant she had a total shunt revision with the latest Telemetric Programmable with two anti syphon devices. Then in January 2021, we had a difficult scan which showed that Millie’s brain was stable but progression in the cauda equina area which is the lower end of the spinal cord. We had limited options available for Millie due to previous chemotherapy and radiotherapy. The only real option was a targeted drug. Due to the rarity and complexity of Millie’s disease, there was only one drug available but it is not licenced in UK. Millie’s oncology consultant approached one of the children’s hospitals to ask “if they would consider Millie on a trial?” They sadly declined, which really frustrated us all. An oncology consultant from another hospital did a presentation to the drug manufacturer in the USA to ask if they would consider prescribing the drug direct. We didn’t get a response for a few weeks but to our delight we had a “YES” and the manufacturer agreed to supply the drug on compassionate grounds.

Update: April 2022: It’s been a very difficult six months

Millie started taking the trial drug in February 2022. There were a number of severe side effects such as sickness, diarrhoea, hair loss, nails lifting, blisters in mouth and throat. Millie deteriorated and lost consciousness, so we had to be blue lighted to the hospital where she was stabilised but later diagnosed with acute pneumonia and sepsis. Her chemotherapy was stopped. She was in hospital for three weeks on oxygen but she had unstable oxygen levels and low blood pressure. Millie was discharged at the end of February 2022 and recommenced chemotherapy in early March 2022. After all of this, Millie had severe side effects and complications towards the end of March 2022 and had to be admitted to a hospice for pain management.

It’s been a very difficult six months with a lot of uncertainty moving forward.
Andrew, Millie’s dad. April 2022